things doctors said to me/ what have you been told?
 

So I've been thinking.. there are many things that doctor's have told me that just don't seem right. Anyone else out there?

These are a few...

"Why should I refer you to a neurophyscologist? Even if they test you and find something wrong, they can't do anything!"

Around one year.. "After one year you are never going to get better"

"There is no way that you have sleep apnea, you don't have the build for it."
Even with a neck injury? "Yes, absolutely no way."

"Concussions do not cause organic brain damage"

I can probably think of more, some are ridiculous, some are funny and some are just infuriating! Has anyone else experienced this?

<"Why should I refer you to a neurophyscologist? Even if they test you and find something wrong, they can't do anything!">
This one is true even if it sounds unsupportive. The only value to an NPA is to understand your symptoms so that you can accept them and learn work-arounds and accommodations.

<Around one year.. "After one year you are never going to get better">
Statistically, this is mostly correct. Any recovery after one year comes slowly and is less likely.

<"There is no way that you have sleep apnea, you don't have the build for it."
Even with a neck injury? "Yes, absolutely no way.">
This doctor has no clue about Central Sleep Apnea where the nervous system malfunctions to allow breathing to stop. He is referring to Obstructive Sleep Apnea.

<"Concussions do not cause organic brain damage">
Clueless as a doctor can be. Find a new doctor. This one is worthless.

Mark, can you show me some articles that state claim to the one year theory? My day was going great until I read your post on this.

I reach my one year mark on Feb 5th of this year.

I would be very cautious about taking away people's hope of recovery after the first year post-injury, especially as our knowledge of brain injuries, recovery and potential treatments expands. It wasn't that long ago that the (once-maligned) concept of neuroplasticity revolutionized our understanding of the brain's ability to adapt over the course of a lifetime. I would be very wary of endorsing the blanket statement made by that doctor.

Just off the top of my head, I can think of some athletes whose recoveries took closer to two years - e.g., Corey Koskie, Mike Matheny (the latter said it took him 18 months to be able to do the things he was doing pre-injury, and he was recently - about five years post-injury - named manager of the St. Louis Cardinals baseball team, a prestigious and demanding position).

I'm not Mark but my neuropsych said how it is at 1 year is basically how it's going to be. He said there may be some slow and minor changes but not to count on it.

I stopped progressing at 4 1/2 months. I have had very limited changes since then. (I am 2 months shy of 2 years.)

I would be interested in unpacking that statement a bit more. Does that mean all symptoms at one year are likely to remain as is? Or do some have the potential to continue to progress (some more slowly, some more quickly)? How do other variables like age, medical history, native intelligence, social support, etc. factor into the prognosis? It seems to me awfully arrogant to tell a patient (implicitly or explicitly) that once a patient hits the one-year mark, nothing is going to get better.

A friend said it took her 14+ months for all of her PCS symptoms to go away.

My doc (world-class neurosurgeon and highly experienced concussion specialist) told me at 7.5 months that recovery might take another 2-3 months, or could take another year. Given my progression to date, he said there is a very good chance I will recover to close to 100%.

Incidentally, a relative was a pioneering neurosurgeon who (among other things) worked on rehab programs for soldiers post-WWII, some of whom were initially told they would never walk again. Thanks in part to his efforts, many of them did and enjoyed greatly improved lives. Fortunately, he didn't rely exclusively on the statistics available at the time.

one year statement
 

All I can speak of is my experience... The one year thing was untrue for me... mine has been a slow recovery but I see many improvements since my one year mark. I agree with greenfrog. When my doctor told me this I was devastated. It was awful to live with that thought.

It is something that can be kept in the back of your head, but don't let it get you down. Everyone is different. Heres to hope! In an non-naive way:)

I see people posting their one year anniversaries here. I remember that day, how discouraged I was and I remember not being able to do what I can now, even with a reinjury. In fact I found a lot of my recovery to come around the year and a half mark.The hardest part for me was around month 8 or so. That was the most depressing, discouraging time. The main difference was the brain fog, it didn't really get better till after a year.

Everyone stop.

Do take everything that's been said here with a grain of salt.

Mark did say it was "statistically speaking" so you shouldn't take that as more than what it is. Do you want to be a statistic? People recover at different rates depending on the injury, genetic makeup, and a whole pile of other factors that influence the condition.

The question is, knowing what you know, what are you going to do about it?

Don't make me irritated! ;)

Wow, that is harsh about them questioning your referral to a neuropsychologist.

I've just been told it takes time....TIME TIME TIME, that's all I hear from the doctors. My new neurologist said that 90% of people are better by one year. He said that was based on his experience of dealing with thousands of brain injured patients. This is the norm when it comes to neurologists.

It sounds like you need a new neurologist.

Well, according to Dr. Glen Johnson, clinical neuropsychologist and author of the online traumatic brain injury guide ( www.tbiguide.com ) ....

" As a neuropsychologist, I look at complex thinking and very subtle changes in behavior. I use psychological tests that look for changes in thinking or memory. Research on these tests indicate that for two years following a head injury, there is evidence of improving scores."

He goes on to say that many in his long term support group report lessening of fatigue up to 3 years after injury. Slow? Yep. Progress? We'll take it.


For those of you disheartened by the thought of progress only thru the first year... go back and read the tbiguide. It is encouraging and realistic.

Incidentally, the physiatrist my husband now sees says a large majority of her patients continue to improve 18-24 months post injury.